Saturday, November 11, 2017

Who I Am and My Diagnosis Story

My name is Paula Valencia and I'm 23 years old. Welcome to my first blog. I decided to start a blog because on my social media I speak up a lot about my daily struggles and fights. I may look like a "normal" person, but I have an INVISIBLE DISABILITY. I was diagnosed with Juvenile Rheumatoid Arthritis at the age of 11. I was diagnosed in what's now called the Cohen Children's Medical Center in Long Island Jewish hospital in New Hyde Park. I was just starting middle school so it was definitely a hard time starting a new bigger school and dealing with an illness I had no idea what it was. Growing up, I was a very active kid. I played multiple sports from basketball, karate, swimming, and dance. I was constantly running around and was always super active. I started feeling symptoms when my right ankle started bothering me while playing sports. My mother took me to the doctor and I took X-rays and the pediatrician said I must have sprained my ankle to take it easy with the sports for a little. Once I was cleared to play sports again I was playing all the sports like as if nothing had happened. From then on I started randomly feeling pain on my ankle, but since I knew it was because I had sprained it I ignored it. After a few months my little brother was only 7 at the time hit my hand my accident and my knuckles swelled up really bad. I remember feeling the pain when he hit it and it was unbearable. I ran to my mother and showed her and she worried right away. We went to the pediatrician and she asked me how I hurt my hand and I told her. Once I was done she asked me how my ankle was doing and I told her that it would still hurt. She right away said I needed to get blood work done and told my mom and I she was referring us to the hospital in order to get more test done because it just seemed off that my little brother could've caused such a bad injury when he is 4 years younger than me. The day came and we went to the hospital. They looked over the blood work my pediatrician had done at her office and then they examined me. They examined my entire body from head to toe and ran more blood tests. I had no idea what was going on. Once she finished, she told my mother that I had Juvenile Rheumatoid Arthritis and that it had to be treated immediately. My mom was super anxious and worried and started asking questions regarding what JRA was. The doctor was explaining to my mom who was in tears what it was and I remember my mom asking if I was going to die. Not knowing what was going on I started to worry and started crying because I just didn't understand and the pain was really bad after everything that doctor did to examine me. The doctor had finally calmed my mom down and all my mom did was hold me while the doctor explained to me what I had. At that age all I understood was that I had an illness that caused a lot of pain if it wasn't treated. They explained to me that I would be put on medication and that I am very lucky to have gone to them when I did because if I would’ve taken a month longer, I would’ve been in a wheelchair. The doctor told me that the illness was progressing very fast and that if I wanted to play my sports again I would have to take all my medication every single day. I agreed and from that day forward it was a few rough months to get used to my new lifestyle. I was on many medications from Naproxen, Prednisone, Methotrexate, Enbrel and many more. That year I had the most depressing holidays because I wasn’t able to walk or do anything. My Juvenile Rheumatoid Arthritis made me change the way I lived my life. I never had a normal childhood because I was very limited on what I was capable of doing especially when it came to everyday tasks. I wasn't able to do things like shower on my own, put my clothes on, walk, grab a spoon and lifting my arm to reach my mouth, etc. and had my parents doing everything for me. It was never easy. As the years went by, I learned how to try my best to live a normal life. It took me a couple of years to get back on playing any sport. It's hard for people to understand that I have an illness. 12 years later, I am doing everything I want to do. I played sports and did many activities in high school and now I try my best to stay active the best way I can. Staying active has helped me manage my JRA and I do not let it stop me. There are times where I do get upset because my JRA starts acting up a bit, but I do not let it get to me. It has been a rough struggle, but I have managed to go through all the flare ups I’ve had to having no pain at all for a long time. I was in remission for about a year and I was able to lower most of my medication. I was down to taking my Enbrel every other week and taking Naproxen only when needed. In March, I was having a rough time and got bad news from my Rheumatologist. My Enbrel, which was the greatest medication I had been on was not doing anything to my body anymore. For the first time in the 12 years, my treatment was not working. I was switched to Humira and till this day, my body is not 100% okay. I still deal with random flareups as well as random stiffness and times where my body can't move on it's own without help of someone else. I’ve been through a lot to get to where I am right now, but I try my best not to lose hope and not give up. Dealing with JRA is not easy. I may look completely "normal", but I do have an invisible disability that slows me down at times. I hope that with this blog, I can teach many of you what it's like to live with an invisible disability as well as an autoimmune disease. This is my story of my diagnosis as well as how I managed my JRA a bit. Future posts will explain more of what JRA is and how it affects my daily life. 
If anyone has any questions feel free to comment or email me :) 

- Paula Valencia 

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